Hi guys

, I am new to the group I have SFN and Erythromealgia all started over two years ago 'nightmare' I have seen every doctor you can think of and only until quite recently they thought I was crazy and stressed as all my bloods and exams are normal, but now my hands are bright red 24/7 and my face and nose they are listening but have no idea what this is. Iv been on Lyrica and Cymbolta but left me worse off. Iv been doing a lot of research on nutrition and chronic pain, has anyone tried Paleo or even just eliminating dairy. There is alot of research out there on how milk is so toxic for the body,

Hi Micky - like you, I've done a considerable amount of research on nutrition, esp. as it relates to chronic inflammation, looking for ideas on how to improve my diet and hopefully EM. The consistent advice given in everything I've read is how important it is to avoid refined grains, sugar, and processed foods. I follow a Paleo-ish diet however I still have some dairy and some legumes. I definitely feel better overall eating this way and it seems to help mitigate EM somewhat. I tried no dairy for a couple of weeks but it didn't make much of a difference for me. So I still have yogurt since it's such a great source of calcium and also contains probiotics. From what I've read, there is quite a bit of controversy regarding grains (wheat in particular). Personally, I have removed them from my diet for now and feel better. I've read several books that have been interesting to compare:

The Abascal Way - Kathy Abascal

The Blue Zones Solution - Dan Buettner

The Wahl's Protocol - Terry Wahls

Grain Brain - David Perlmutter

Wheat Belly - William Davis

Also, it is helpful to cross-check the info in these books with the studies they mention. I use the search engine called Pogofrog which is intended for physicians. It cuts out a lot of the information that lacks credibility.

Highly recommend Paleo as it has significantly helped me. Another book I have found insightful is Amy Myers's "The Autoimmune Solution" focusing on inflammation primarily through nutrition, stress, sleep, and environmental toxins.

It is also helping me a lot.

I also recommend paleo. I have been eating this way for 2 years now. I can’t say that I cured my EM, but it has made me feel a lot better overall and probably slowed down the EM. (It’s always hard to say what is helping with a condition that is always getting worse, as this one is for me). I even lost the 30 pounds that I gained while taking Lyrica! I have read most of the books that the others commenters mentioned and would also suggest the documentary called The Perfect Human Diet.

When I was diagnosed, I was encouraged by a chiropractor to consider a "non-inflammatory" diet. She introduced me to a book called, "It Starts With Food". I highly recommend it! While it didn't take all of my symptoms away, it really helped with the inflammation in my feet.

Additionally, I would read the Medication Sense articles written by Dr. Jay Cohen. Dr. Cohen was bed ridden by this awful disorder for many years. He is very active now! You can consult with him over the phone for a fee, but I'd say it's super worth it! I did and learned so much and he didn't short change me! I think we visited for almost an hour.

I encourage you stay in the fight! I'm not taking any neuro or pain meds... I take Propranolol, 10mg three times a day and thanks to Dr. Cohen's suggestion, I now take Ciproheptadine, 4mg three times a day. I'm not 100% back in the game, but definitely 80% at minimum.

Hang in there! I hope you find some relief really soon!

My Best!

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Hi my name is Rose I’ve been diagnosed with em. almost a year now I have it on my face my hands and my feet temperature seems to be the key to all of this I’m just asking what kind of medication everyone is basically using in what seems to work for them we still haven’t found the right one for me but I can’t even go outside of 2 degrees is anymore than 68 degrees

Hi, for me it is the amytriptiline ketamine cream that works. Ultracet work a little also, but it is the cream that have saved my life !! I have tried many medications without success before that.

Yes I tried that made things worse If there’s anyone out there that knows please respond

Rose, I've been taking Mexiletine 3 times a day (150mg x 3) for 2 and a 1/2 months. It has had a major effect. It hasn't made all my symptoms go away, but flares no longer occur during normal activity or at rest. Prior to beginning Mexiletine, I was having regular flares, multiple times a day. It doesn't work for everyone and not everyone can tolerate it. You can't take it if you have heart disease. Otherwise, it's worth asking your doctor about it.


Yes I tried that made things worse If there's anyone out there that knows please respond

So this is the only medication you take through out the day

I take propranolol, as well, but saw much more improvement with mexiletine.